Meeting With the Neurologist

We met with a pediatric neurologist a little after MJ turned 7 years old. We sat there while he analyzed different things and examined MJ and waited to see what he'd say. After the hour long examination/meeting/whatever it was, we got sort of an instruction list of what needed to be done.

According to these neurologists, they thought MJ had a PDD (Pervasive Developmental Disorder) or possibly Asperger's Syndrome both of which I had no idea what they were. They wanted us to meet with a team of psychologists and psychiatrists to evaluate MJ.


BUT, they also wanted to do an MRI to eliminate any other possiblilities,

AND they also suggested having MJ relooked at for physical therapy and possible leg braces to correct his gait.

So, we scheduled an MRI for later that month, and also scheduled an appointment with the department for Children with Special Healthcare Needs to have him evaluated for whatever those things were.

The MRI came out clear, not showing any abnormalities, but the other appointment wasn't for a couple months. So in the meantime, I began researching anything and everything I could find about PDD or Asperger's Syndrome to see why they might think our son had it.

The Meeting for Special Ed

So, here we were, MJ was in this new school in an advanced class of 1st and 2nd graders and yet we got the letter home asking us to come to a meeting to discuss special ed services. I remember looking at the letter and thinking, "What is this? He's in the gifted class? What do they mean for special ed?"

We went to the school and met with his teacher, the speech pathologist, and the special ed teacher. And then it was like this out of body experience or dream or something where they began telling us that "something is wrong with your child" and they didn't know what but we had better go get it checked out.

Yeah, they knew he was smart, but his teacher was telling me that he was having a terrible time with speaking and writing, and it wasn't just something that she thought was normal. She said when she watched him write it was as if he physically could not do it like it was all shaky and forced. And then she was saying how awkward and clumsy he was when he walked. Also, she was saying that his stuttering was so bad that the other kids in the class weren't making any sense of what he would say because all his ideas were so stuck.

The special ed teacher and his teacher began throwing out things they thought was wrong like a previous brain injury and all this other major things and we were sitting there in almost a shock thinking WHAT?!

Mainly they were wanting to set up something for speech for MJ, and then they also wanted to have an occupational therapist check him out, and the special ed teacher wanted to do all these tests, but they were saying, why just put him in speech, when they thought there was an underlying reason behind the problems.

We left with his teacher telling us we should take him up to the children's hospital and figure things out for ourselves.

So, with that---that is what we did. We first called our pediatrician who referred us to a pediatric neurologist and we made our appointments wondering what would they would say.

Gifted?

So, by now, I figured MJ had all these little quirky things about him--the toe walking, the pickiness, the timidness, the stuttering, but it wasn't that big of a deal. Actually, what we were noticing now was how smart he was. I remember he was barely 4 years old and he was reading.

When he entered Kindergarten at age 5, he was bored to tears. He was reading chapter books but couldn't stand school where all they did was color, sing and learn about the ABC's. The teacher had him reading these "BOB books" which were like "see kit run, Max can jump, Pat is glad" and he was hating it so badly. He was so bored with these books. He was reading Harry Potter at home. Instead of just reading the BOB books, I would quiz him on pointing out the verbs, adjectives, nouns, and punctuation, just to get him something else to learn.

He was also bored in math, which in Kindergarten was counting to 100, while he was adding and subtracting double digit numbers and multiplying a little. Just things he liked to do. I remember him telling me one day what a solid, liquid, and gas were. And it wasn't basic. I can't remember exactly what he said to do him justice, but it was about the molecules and how they were condensed or something. Myself, I would just say hard, like a drink, and ??

I didn't know what to do. He would get up in the morning and say he didn't want to go to school because he hated it so much. It was so hard to see him so sad. I tried to talk to the teacher to see if he could do anything more advanced and she said her hands were tied because she had such a large range of abilities in her class and she couldn't go ahead if she still had kids that would say the #3, but hold up 2 fingers.

But, come February, we got a letter in the mail inviting MJ to be tested for a separate full time gifted program to start in 1st grade. We went ahead and let him test, and when the scores came back at 99%, he was invited into the program, and we accepted.

So, yeah, maybe we had this quirky kid, but he was pretty smart, and starting at 6 years old he was put into a new school in a class with 1st and 2nd graders. So maybe he didn't have problems, maybe he was just gifted? Little did we know that in just a few months we'd receive a letter home from the school asking for an evaluation for special ed services.

We have another view of all this and share our experience with the challenges of raising a gifted child at www.parentingthegiftedchild.blogspot.com

Stuttering

So, besides the whole toe walking thing and afraid of playground equipment and somewhat oversensitivety to textures, there wasn't anything too different that I noticed with MJ. The only other thing was that he stuttered.

We began to really notice this when he began preschool at age 4. The teachers gave us some informative papers on stuttering and said they mentioned him to the speech pathologist.

It wasn't that he was a traditional stutterer. He didn't repeat syllables or get stuck on a word or sound. Instead he would repeat phrases over and over like he couldn't get the whole sentence out. Like he might say:

"Today, today I, today I went, today I went to the store."

We weren't too worried, and the preschool teachers didn't seem too worried either. They said that it was common for preschoolers to start stuttering because they are taking in so much information and learning so fast that there is just so much in their heads and it gets jumbled when it tries to come out by speaking.

So, I didn't worry, and we continued to work with MJ at home as far as stretching his heel chords, and we already knew what foods we could get him to eat.

Toe Walking

Well, at first we thought the whole walking on toes thing was because just a few months prior, MJ had stepped off of the bed funny and broken his leg. Maybe while his leg was in a cast, he was stepping on his tip toe with the other foot to even things out, and then he just got used to doing it. Well, maybe. We know he did not start out walking on his toes when he first learned to walk.

We went to see a physical therapist and occupational therapist. The physical therapist tried to work with MJ on his balance and coordination and tried to get him to walk heel toe instead of toe only.

This didn't do much good. It was only by constant reminders that he would put his feet down, or if he knew you were watching his every move. It didn't matter much to me that he walked a little funny. So what. My only concern was that it would cause him problems later in life with extra pressure on his knees or calves, or maybe the tendons in his ankles would grow short. We took the PT's exercises home and eventually quit therapy when it was getting too expensive and our insurance changed.

We went to see an orthopedic specialist because the pediatrician kept telling us eventually we'd have to do surgery on MJ's heel chords to make them longer, and we thought we'd get a 2nd opinion.

The orthopedic specialist suggested an idea to cast both of his legs in a 90 degree angle to force the feet to be flat for a short time to give his ankles more flex. We thought this was less invasive, so we went ahead.

Here we were over the summer with MJ's 2 legs in walking casts. Let me tell you, that was a fun time! The furniture still shows wear and tear from this time.

Then when it was done, the casts off, and did it change anything?

Yes, his heels showed more flex and things measured better, but did it stop him from walking on his toes? Nope. It continued on.

Sensory Integration Disorder--what is it?

Of course, even before seeing the therapists, I was on the internet all the time typing in key words trying to find out what was wrong with MJ. I would type in "walk on toes" and "sensitive to textures" or "afraid of heights" and out of everything, this is what I was coming up with--something called Sensory Integration Disorder.

So kids with this have some sort of extra need for like an over stimulus amount of sensory, like they may spin a lot or need to be moving all the time.

OR,

They may have this extra sensitive thing going on that everything is TOO much for them, like they can't handle the way things feel or taste. Well, not taste, but the way the food feels in their mouth. Or they are overly afraid of jumping or climbing or touching things.

Or it can be a mix of the two--an over sensory need AND an over sensitive thing.

This is what made sense with MJ. He could eat foods mashed up--like he would still eat baby food veggies, but if it was the chunks and real, he couldn't handle the texture. He freaked out if anything got on his hands or made him dirty. He couldn't handle tags on clothing, or if his pants or socks weren't perfectly stretched out touching his skin. And then of course he was 3 years old and he had never even been down a slide or swung on a swing really because it frightened him so terribly much.

But really---was this thing even REAL? Or did someone just make it up? It all sounded crazy.

When Do You Notice Something is Odd About Your Child?

Everything is normal, everything is fine, you think. This is your first child. Checkups at the doctor are fine. Maybe he doesn't start to crawl until almost 9 months, and maybe it is funny that he does a 3 legged crawl while dragging the left leg. And then maybe he doesn't walk until almost 16 months, but so what. And then maybe he doesn't talk until 21 months old, but no big deal, because it goes from first words to full sentences in less than a month. This really isn't anything. There are slight struggles with eating, and he seems to have a problem with certain things touching him, but I guess that's just him.

One day he is 3 years old and you sign him up for gymnastics. As he runs around with the other kids the other parents and teachers begin to shout out "Hey! Look at that kid! Look how he runs around on the tips of his toes! Wow! He must have super strong calves!" And then as all the other kids are climbing up and over things, your son won't even climb a ladder because he is terrified.

So all of the sudden, something is different. When did he start walking on his toes, and have I never noticed it before? This wasn't just sometimes. This was all the time and always. He hardly ever was flat footed. He stood on his toes, he walked on his toes. Hmmmm.......

We took him to the pediatrician who threw out wild ideas like Spinal bifada and MDS. She had him tested, but he was fine, so she referred us to a physical and occupational therapist.

At this point he was 3, and he was diagnosed with something called Sensory Integration Disorder.

Beginning of our Blog

When does it start? Do you notice if you've never known anything different? Our first child was diagnosed with Asperger's Syndrome at the age of 7. But how did we get to that point? What were the signs and what did we miss?

This blog is to be a help to other parents who might have the worry something is "different" with their child, or maybe to those whose kids who have already been diagnosed.

This was our first child. What did we know if anything was right or wrong or weird or not?

This is our story of our son MJ and how we came to terms with his Asperger's and the long years of trying to figure it out. This is also to be our continued journal of what the future may bring.